Discussions By Condition: Muscle conditions

4 years and no diagnosis; any ideas welcomed!

Posted In: Muscle conditions 4 Replies
  • Posted By: funnybunny
  • July 15, 2008
  • 10:53 PM

Hi I have been having what seem to be generally neurological issues, but I do have a lot of muscle stiffness in my chest, neck, and upperback that I have had for two years now. My first set of symptoms started 4 years ago. I had a lot tingliness in my forehead and in my cheeks. I also had stabbing pains in my cheeks and a twitching pain in my lip. I also had some pain behind the eye at times and this is when i started having blind spots in my left eye. And i had flashes of light in both eyes. I also then noticed my neck was becoming stiff. It hurt, but more of a generalized ache. I also had shotting pains in my back. I also had an electric shock like sensation down my spine(only happened once, and has never returned) and an earthqake like sensation inside my entire body(only lasted about 1 min and only happened to me twice) And after about two months, the symptoms just disappeared. I was fine until the following year when I the fatigue started. It wasn't that bad at first, but now the fatigue can be so exhausting at times. This is also when I notice more stiffness of my neck and I started having chest pain that radiated down my inner arm(it started off as a tickly stabbing pain, but now it can be more intense, but they are usually brief) This happend sometimes for a couple hours on certain days, kind of came and went. And one day, left arm went partially numb, it felt like it was asleep and this happened for about day and a half and then went away. This is around the time the muscles of my back and chest became very stiff. ANd the entire thoracic region was weak at times. THis process i think took about a year. I also noticed leg weakness at times and a muscle spasm of my left foot(it would lock into a bent postition and it usually takes 1 min to get out of that position, very painful) I also started having urinary frequency, and sometimes, a little will come out(this may or may not be related) And then some weeks I had a lot of shooting pains elsewhere in the body, back in the face again, a burning pain in the foot, complete numbness of two left toes, occasional eye problems, two episisodes of vertigo, and sometimes joint pain in the knees, odd sensations of my stomach, wet sensation of the left foot, pressure sensations of the chest, pressure sensations of the head(only lasted a few minutes, it wasn't a headache, because it lasts briefly) a place on the elbow where if lightly touched i have a feeling that someone hit my funny bone. All of these symptoms occured mainly last year and most of them were off and on.
Now of all last year I was pretty bad, and I also had an episode of complete numbness of my neck that lasted for almost two months. But after the neck numbness, I felt better. I had mild fatigue and mild stiffness it seemed anyway, and no other problems! This continued until just last month.
This is what happend in june: It started after I was playing tennis(i was able to play again cause I felt fine, had been playing for 3 months prior to this situation) I had gotten a headache after playing tennis one day which was unusual for me. I figured it was the heat because it was 90 degrees out when I was playing with my boyfriend. We had played for 2 hours. ANyway, the headache got worse after about 4 hours which I thought is not good because that shouldn't happen even in people with chronic headaches. The headache was an intense sense of pressure everywhere. I also noticed I felt very drowsy and when I got up to walk, I was having some difficulty. ANd i noticed i was talking slow. So went to the ER, CT scan was normal. Went home. NExt three days, i was fine. On the fourth day, the headache returned, but not so bad. But I also had an intense deep pressure pain in the back of my neck. And intense pressure pain of my chest that sometimes radiated into my stomach and down the inner arm(I wasn't too woried about that because this happened before, but only this time it kept happening) ANyway, the symptoms would come strong at times, then ease up, and sometimes just go away. And I had pain behind my left eye, couldn't really move it cause it would hurt too much(same eye I've had problems with before) Symptoms happened into the next day as well so back to the ER. Waited for 6 hours only to be sent home(they did do EKG: normal) Also this is when the chest pain stopped. About two hours later, I got up from stitting down, took two steps, and fell down from being extremely weak and shaky in the legs. I also had complete numbness of the right arm(it felt extremely heavy, could barely lift it, i mean barely) The pressure pain turned to a burning in the head and neck. I suddenly felt very drowsy, talking slow again. Back to the ER(different hospital) and on the way there, kept jerking the left arm and right leg(involuntary of course) Upon registering, couldn't sign my name(couldn't lift the arm) While waiting for the doctor, I had intense burning pain in the eye. The jerking movements started happening again when lying down. The dr. did CT scan with contrast this time and chest x-ray, everything normal. Told me to follow up with neuro. Exactly what Im going to be doing on 8-4. Next day, very weak in the legs, trouble walking more so than ever before(very unbalanced) and this is odd but blurry vision for two hours then it went away. All the other symptoms disappeared.
Since then I have had the same types of previous problems come back, but with a few more new problems, like intense burning of my upper back at times, burning of my thigh, burning in parts of my head, eye pain again, oh and this time i have had double vision but of the right eye?(only lasted about 5 min) and color differnece of the left eye(lasted a few min. and color was dimmer in the left eye)
Tests done: Just about everything except an mri of the brain and spine.
ANA: negative(tested twice)CBC: normal TSH: normal Reumatoid factor: normal ANti-Ro: normal Lyme: negative(tested twice) ESR:normal other urine and blood tests all normal liek diabetes hep. HIV liver function urine function potassium all those
MRA of heart, ECHO, stress test, holter monitor, all normal
chest x-rays(i think like 4 to date cause of ER visits) normal
chest CT and neck CT: normal
and finally head CT: normal
I have never gone to the eye doctor though to tell him about my recent eye problems. (the eye problems in the past i blew off along with my first set of symptoms, i didn't think anything of it at the time) So as far as he knows, my eyes are fine with my contacts(have had bad vision since third grade, so i figured the blind spots and flashes of light were related at the time) I tend not to be much of a worrier and before this last incident, I blew off alot of my docotor's appt. and it could be why I still don't know yet cause some of it is my fault. But now, I am worried cause of the last even that happend. Im very confused and have really thought about the possiblitly of this being ms. I though about it once before two years ago and the first doctor i went to was a neuro. but he told me i had nothing neurological wrong with me(ooh how mad i am now!!!) ANd i believed him and thought nothing more about the idea and thought i was silly for thinking that and assumed i had either chronic fatigue syndrome or fibromyalgia(fibro was ruled out but still a possibility at the time i seen my rheumy; he did an evaluation and i had no tenderpoints cause gee im not tender now i know better; back then i thought because of shooting pains that's what it was) so i continued to think this was CFS. Now, I'm pretty sure it isn't. Im not on any meds. I was exercising but now im scared to play tennis. I sometimes take ibuprofen for pain. ANd lately, ive been taking asprin everyday just in case.
LAtely, ive really come to the realization that this is either ms or some other neurological problem. Lyme i think could still be a possibliity but the eye pain kinda throws me off on the idea. Then I thought about rare things like something to do with the arteries, but i think the heart MRA would have picked something up? Who knows. I know i have to wait until the mri is done. In the mean time, its like all other times. ANxious to wait for test results. I hate that. Which i why i try to avoid going to the doctors in the first place. Then my mom yells at me which makes it worse so i have to go, i think i get it from her. SHe's the same exact way. SO she has no right yelling at me. lol.
Anyway, I was just wondering if anyone out there has had similar experiences and found out their cause. I know every experience is highly individual and what effects one person, may not do so with another. BUt any thoughts would be apprectiated. Am I sane for beliveing this to be MS?:confused: Thank you for reading all this! I know that was alot!!

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4 Replies:

  • Definitely sane. I have had many similar problems although I don't share some of your symptoms and I have some you don't. But that being said, I know from my travels in the world of doctors that only an MRI will tell you if you have MS and MRIs will pick up herniated discs that x-rays and CT scans won't. So while MS is also a possibility until it is ruled out, it may be more simple. I had 2 herniated discs in my cervical spine (neck) that caused many of the same problems you described including the feeling like your funny bone was hit and the tightness in your chest running down you left arm- that one really freaked me out- some of my dizziness, headaches, tingling, back and shoulder pain. I did 6 weeks of physical therapy twice a week and all of that stuff resolved. Unfortunately I am left with some other things that are apparently unrelated. My next step is to get my sinuses cleared out and see what that resolves and go from there.My suggestion besides obviously following up with the Neuro on the MS Dx is to also look into B12 deficiency. I was slightly deficient- although now my numbers are up but I felt worse on the supplements so I am trying to work that one out. You'll want them to test your homocysteine levels at the same time and you might as well find out your cortisol level if that hasn't been checked too. It could be one major cause or just as likely it's a bunch of little things all conspiring to confuse you (and your doctors) and make you feel like crap.Please post again when you get more info.
    dizzy lizzie 192 Replies Flag this Response
  • I would say to get RETESTED for Lyme! Sometimes a person's immune system can be so far down that it can just give up. Basically quit making antibodies against the Lyme . So, therefore it will produce a negative test. Most MD's will run what is known as an ELISA, IF or EIA. Which in LLMD (Lyme Litterate MD) is known as a bogus test. It produces a lot of false negatives. As I stated above. Most patients are then told because they have a negative test that they do not have Lyme. Most will then do a WB (Western Blot). This is a more definative test. Which tests for IgG or IgM markers. It tests for the bands for Lyme. If you do get tested. Make sure it goes to IgeneX labs in Palo Alto,Ca. Or it is not worth the paper it is writen on. They specialize in Lyme and it's coinfections : Babesea, Erilichea, Bartonella and Rickitesea (PCR). IgeneX does a Fisch screen as well. www.igenex.com800-832-3200 Also note that just because a doctor tests you coinfections and it's neg. Does not mean you do not have them. Your immune system could just be too far down. Also there is Fry Labs. They will actualy smear your blood. Then take pictures of it by using a darkfield microscope. Then send them to you, along with the report. Please get retested. That is the best advice I can offer. As Bartonella causes neurological symptoms and 10-15 injuries per organ. :eek:
    zephyr 10 Replies Flag this Response
  • I would have the Lyme rechecked by IgeneX in Palo Alto, Ca. They specialize in Lyme and it's coinfections : Babesea, Erilechia, Bartonella and Rickitisea. Most MD's only run an ELISA, IF or EIA. Which most show negative if a persons Immune system is down. It is a bogus test and will produce a neg or false negative. Because if a person has had Lyme for a long time it will stop producing antibodies to fight off the disease. The body is tired. That may be why you are so fatigued. Also Lyme is the great mimmicker. It is greatly diagnosed as MS. I have a cousin and a good friend who were misdiagnosed with MS and now have Lyme. Most MRI's show abnormalities in the brain or Lesions. Although a good Neurolologist that knows about Lyme will know that it is due to Lyme....not MS. My cousins entire right arm went numb on her. It is also misdiagnosed as ALS (Amatphrophic Lateral Sclorisis), Lupus, Fibromyalgia, Chronic Fatigue, Hutchington's and Chronic Immune Dificiciency Syndrome. I would also have my blood sent to Fry Lab to have it tested. They look at it under a darkfield microscope. They will even take a color photo and send it to you, with the final report. www.igenex.com800-3-832-3200 I would also suggest having your Neurologist order a Spect Scan. It is a color film of the brain. MRI basically only shows the anatomy of the brain. This will allow him to see the Oxygen Flow inside the Brain. Also will allow him or another GOOD Neurologist to tell wether or not you have Neuroborilliosis. Which can be from a coinfection of Lyme.
    zephyr 10 Replies Flag this Response
  • My mom has been Dx w/ Trigimenial Neuralgia and she had severe facial pains, jerking, and burning. It is localized only in the face, but the symptoms are a little similar. She as chronic migraines and major neck stiffness. When she is stressed she can trigger an attack of the neuralgia or migraines. Either way, I believe you have a spinal issue. It may be as simple as a pinched nerve, but I think the neuro doc will have more answers. You definitely need spinal/neck xrays. Hope it helps....by the way, my mom is now off of her drugs for the neuralgia and controls her triggers and doing well....Hope it works out!
    RN2BWendi 4 Replies Flag this Response
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